A journey within a journey

For me, it always seems as though every journey, whether trial or triumph, has smaller journeys involved in the process. My journey through cancer diagnosis and treatment has had a multitude of journeys including, but certainly not limited to, diagnosis, different treatments, remission, and relapse. Each journey required learning, adapting, and overcoming. This past week started a new journey for me that I never expected.

After my most recent surgery including a complete hysterectomy and a peritonectomy, my stomach continued to grow more distended. I was in excruciating pain, couldn’t keep food down from said pain, didn’t fit the majority of my clothes, as well as a whole list of other related issues. I was able to gain access to some more wonderful medication that helped ease the pain and allow me to eat enough to sustain myself without another feeding tube.

I was scheduled to have an MRI and more blood work done to figure out what the complication was. Last week I got the results: my organs do not have enough support to function properly, nor do I have the proper circulation needed for the fluid buildup that was happening. Back track a bit, after my surgery, they did not replace my peritoneum because they calculated that my body would be able to adapt to this change. Well, they were wrong! So here I sit with supports in my abdomen to temporarily hold my organs in somewhat order until I can get in for another procedure to replace.

The hope is that I will not need an artificial replacement. This is where that journey comes into play. My information was submitted to be placed on the transplant list. I know quite a few people that needed different organ transplants and I never thought I’d be on that list, but here I am. I got the official notification that I was on the list yesterday. If I can’t get a transplant in a month, then I will have to get an artificial because it could cause too much damage to my organs if I wait longer than that. The fear is that my body won’t accept the artificial due to previous issues, plus they’d have to remove more of my peritoneum instead of attaching the transplant to what still exists. This is still sinking in. For me, I need a peritoneum without damage and ,of course, matches my blood type with some other specifications. This isn’t something I can go ask someone alive to get tested, why would it be that easy? I actually have to wait for someone that matches what I need to die. I find that a bit out there for me. I never thought I’d be in the position where I’d be waiting for someone to die just so I can get their abdominal cavity lining. Then again, I never thought I’d have cancer either, yet here I am.

With all of this this past week, there was a positive that came out of it. I was able to start back at work this week, which is a massive blessing, even if I can’t do anything and just sit all day. Having an income will be wonderful to help ease the impact of upcoming costs. It will also give me the ability to pay bills and not worry about food for the month. No, I won’t be able to live a thrilling and filled life, but I can go to the extra appointments to help alleviate pain and discomfort and other symptoms and not worry about not having the money to pay the copay.

I have two different parts to me right now: (1) I am ready to call it quits because it’s been over a year since my first diagnosis and I am tired of fighting, and (2) I’ve made it this far, I’m going to keep fighting till the end. I’m trying to stay optimistic. I’m trying to look for the future. I’m trying to enjoy what I have in my life. It’s so hard! It just feels like every accomplishment is followed by another trial.

I’m exhausted all around. I’m drowned in bills and loans. I’m in pain. I don’t want this. This is not the life I want to live, but I’m not going to end it. I know that as long as I’m able, I will fight. I will survive this. I may not know how, but I will.